Caregiver Relief

This blog is ideal for those that are struggling with providing a care for a loved one. Caregiver's are an underserved and unrecognized group. that have little knowledge of resourses and and programs and suffer from Caregiver Stress and burn-out. The Author, Donahue Vanderhider is a renowned Gerontologist from Los Angeles, and specializes in caregiver stress management. Recently commissioned by the Los Angeles Caregiver Resource Center to produce a stress management CD using Guided Imagery.

Tuesday, July 24, 2012

Weight-Resistance Training: Best to Prevent and Slow Alzheimer’s?

As reported this week at the Alzheimer’s Association International Conference, the cost of care for individuals with Alzheimer’s in the United States will exceed $1 trillion by 2050. Researchers are working constantly to determine how we can avert this crisis- not only of cost, but of lost memories and lives.

Four different studies were discussed at this conference that provide interesting insights about the role of exercise and how it affects dementia.

In the first study, 120 sedentary older adults without dementia were randomly assigned to either a walking group or a stretching/toning group. After one year, those in the walking group showed a 2% increase in the size of their hippocampus compared to the stretching group. The hippocampus is a part of the brain that controls memories, and it’s one of the earlier places that shrinks and deteriorates in Alzheimer’s. This study demonstrates that the brain of older adults can continue to grow and improve.

In the second study, 86 adults with mild cognitive impairment (a condition where the risk for developing Alzheimer’s is high) were randomly assigned to one of three groups:

Resistance/Weight Training

Aerobic/Walking

Balance & Tone

The results? The weight training group showed a significant improvement in selective attention (as measured by the Stroop Test), conflict resolution and memory. The participants in this group also demonstrated actual improvements in three areas of their brains.

The walking group did show an increase in the scores on one different memory task called the Rey Auditory Visual Learning Test, but did not demonstrate any other improvements or any physical changes in the brain. The balance and toning group demonstrated no improvements.

The researchers concluded that weight-training for those already diagnosed with mild cognitive impairment was an effective way not just to stave off Alzheimer’s, but even to improve the cognitive function and physical health of the brain.

A third study compared how the initial level of cognitive functioning affected the results after participants were assigned to either a weight training group or a balance/toning group. According to the Alzheimer’s Association International Conference, the results demonstrated that:

The most improvement came from those who were in the resistance training group and had higher cognitive functioning at the beginning of the study.

For participants with lower cognitive functioning at the beginning of the study, the effects of weight training and balance/tone exercises were about equal.

Overall, participants in the balance/tone exercise group were the least likely to demonstrate improvement and the most likely to decline.

What are they saying, in summary? Prevention appears most effective while the brain is healthy, and early detection and exercise (specifically resistance/weight training) is key to maintaining cognitive functioning.

In the fourth study, 47 older adults between the ages of 65 and 93, all of whom had a diagnosis of mild cognitive impairment, were split between a physical exercise group and a control group which received three educational classes on health over the course of 12 months. The exercise group’s curriculum consisted of aerobic exercise, muscle strength training, and postural balance retraining.

The results in this study demonstrated a clear improvement in both memory and in the ability to use language for participants in the exercise group.

I found these studies both encouraging and fascinating, especially as they refer to the weight resistance training. The fact that participants who were already diagnosed with mild cognitive impairment experienced an improvement in cognitive functioning and actual growth in three separate areas in their brains is exciting.

In light of these studies, you may want to read more on how to reduce the risk of Alzheimer’s through exercise. I’ve also added information about what the Stroop Test is and how it’s used to screen for early Alzheimer’s disease.

Please feel free to share any thoughts or experiences related to exercise and dementia.

Tuesday, July 10, 2012

GUILTNobody would ever choose a smiley face as the perfect symbolic emoticon for a caregiver. Caregiving for an ailing loved one is just too stressful — often triggering damaging emotions that can not only undermine your good work but harm your health, as well. Here’s how to cope:What causes guilt: Guilt stems from doing or saying what you believe is the wrong thing, not doing what you perceive to be enough, or otherwise not behaving in the “right” way, whether or not your perceptions are accurate. Caregivers often burden themselves with a long list of self-imposed “oughts,” “shoulds,” and “musts.” A few examples: I must avoid putting Mom in a nursing home. I ought to visit every day. I shouldn’t lose my temper with someone who has dementia.Risks of guilt: Caregiver Guilt is an especially corrosive emotion because you’re beating yourself up over faults that are imagined, unavoidable — or simply human. That’s counterproductive at a time when you need to be your own best advocate.What you can do: Lower your standards from ideal to real; aim for a B+ in the many aspects of your life rather than an across-the-board A+. When guilt nags, ask yourself what’s triggering it: A rigid “ought”? An unrealistic belief about your abilities? Above all, recognize that guilt is virtually unavoidable. Because your intentions are good but your time, resources, and skills are limited, you’re just plain going to feel guilty sometimes — so try to get comfortable with that gap between perfection and reality instead of beating yourself up over it.

RESENTMENTThis emotion is still so taboo that many caregivers are loathe to admit to it.What causes resentment: Caregivers often feel put-upon and upset because of imagined slights by others, including siblings and adult children who don’t do enough to help. Caregiver Resentment is especially felt toward the person being cared for, when the caregiver’s life feels hijacked by responsibility and out of his or her own control.Risks of resentment: Without enough support or noncaregiving outlets, feelings of being ignored, abandoned, or criticized can fester into anger and depression.What you can do: Simply naming this tricky emotion to a trusted confidante can bring some release. Try venting to a journal or anonymous blog. Know that resentment is a very natural and common response to long-term caregiving, especially if your work life, marriage, health, or outside activities are compromised as a result. Know, too, that you can feel this complicated emotion yet still be a good person and a good caregiver.

ANGERSome people outwardly show their anger more than others, but almost no one is never angry.What causes anger: We get mad for reasons both direct (a balky loved one, an unfair criticism, one too many mishaps in a day) and indirect (lack of sleep, frustration over lack of control, pent-up disappointment).Risks of anger: Chronic anger and hostility have been linked to high blood pressure, heart attack and heart disease, digestive-tract disorders, and headaches. Anger that builds up unexpressed can lead to depression or anxiety, while anger that explodes outward can jeopardize relationships and even harm others. Managing Caregiver Anger not only helps your well-being but makes you less likely to take out your fury on your loved one.What you can do: Rather than trying to avoid anger, learn to express it in healthy ways. Simple deep-breathing exercises can channel mounting anger into a calmer state, for example. Talk yourself down with soothing chants: It’s okay. Let it go. Ask yourself if there’s a constructive solution to situations that make you angry: Is a compromise possible? Would being more assertive (which is different from anger) help you feel a sense of control? Laughing at absurdities and idiotic behavior can provide a healthier biological release than snapping.

WORRYA little goes a long way, but sometimes we can’t turn off the fretting.What causes worry: Good intentions, love, and wanting the best for your loved ones are the wellsprings of worry. Focusing intensely on the what-ifs provides a perverse kind of comfort to the brain: If we’re worrying, we’re engaged. Of course, that ultimately triggers more worry and upset because it’s engagement without accomplishing anything.Risks of worry: Being concerned is harmless. Overworry and Obsessing, however, can disrupt sleep, cause headaches and stomach aches, and lead to mindless eating or undereating.What you can do: If you notice worrying thoughts interfering with getting through the day or sleeping at night, force a break to the cycle. Try setting a timer and resolving to focus on something else when the five minutes is up. Then flip negative thoughts to their productive side: How can you help? Who can you call? Are there possible solutions? And don’t be shy about seeking out a trained counselor to help you express and redirect obsessive ruminations more constructively.

LONELINESSYour world can shrink almost before you realize what’s happened.What causes loneliness: Friends may back away out of uncertainty or a belief they aren’t wanted. Intense time demands lead you to drop out of outside activities. If you’re dealing with dementia, the loss of your loved one’s former level of companionship is another keenly felt social loss adding to isolation.Risks of loneliness: Your very brain is altered: People with large, rich social networks have different brain structures, new research finds. Loneliness seems to curb willpower and the ability to persevere, and it can lead to overeating, smoking, and overuse of alcohol. Lonely people also have more cortisol, the stress hormone. And social isolation is a risk factor for dementia.What you can do: Expand your social circles, real and virtual. Arrange respite help, so you can add at least one outside activity, such as one you’ve dropped. Take the initiative to reach out to old friends and invite them over if you can’t get out easily. Consider joining a support group related to caregiving or your loved one’s illness. In online support groups you can find kinship with those who know just what you’re going through.

GRIEFDon’t think this one applies yet? Think again.What causes grief: Although most people link grief with death, anticipatory grief is a similar emotion felt by caregivers who are coping with a loved one’s long-term chronic illness, especially when there are clear losses of ability (as in dementia) or when the diagnosis is almost certainly terminal.Risks of grief: “Long good-byes” can trigger guilt as well as sadness if one mistakenly believes that it’s inappropriate to grieve someone still alive. Mourning the loss of a beloved companion is also a risk factor for depression.What you can do: Know that your feelings are normal and as painful as “real” (postmortem) grief. Allow yourself to feel sadness and express it to your loved one as well as to supportive others; pasting on a happy face belies the truth and can be frustrating to the person who knows he or she is ill or dying. Make time for yourself so that you’re living a life outside of caregiving that will support you both now and later.

DEFENSIVENESSProtecting yourself is good — to a point.What causes defensiveness: When you’re doing so much, it’s only natural to bristle at suggestions that there might be different or better approaches. Especially if you’re feeling stressed, insecure, or unsure, hearing comments or criticisms by others, or reading information that’s contrary to your views, can inspire a knee-jerk response of self-protection: “I’m right; that’s wrong!”Risks of defensiveness: While nobody knows your loved one and your situation as well as you do, being overly defensive can make you closed-minded. You risk losing out on real help. You may be so close to the situation that you can’t see the forest for the trees, for example; a social worker or friend may have a perspective that points to what really might be a better way.What you can do: Try not to take everything you hear personally. Instead of immediately getting cross or discarding others’ input, vow to pause long enough to consider it. Remember the big picture. Is there merit in a new idea, or not? What you’re hearing as a criticism of you might be a well-intentioned attempt to help your loved one. You may decide things are fine as is, and that’s great. But if you start from a point of calm and confidence, the focus becomes (as it should be) your loved one, not you

Thursday, June 28, 2012

Participating in Alzheimer’s Disease Clinical Trials and Studies

FACT SHEET
Alzheimer’s Disease Education & Referral (ADEAR) Center
A Service of the National Institute on Aging
National Institutes of Health
U.S. Department of Health and Human Services

When Margaret was diagnosed with early-stage Alzheimer’s disease at age 68, she wanted to do everything possible to combat the disease. She talked with her doctor about experimental treatments and clinical trials she had heard about in the news and worked with the doctor to find a trial that was right for her. Margaret appreciated being able to talk to experts about Alzheimer’s and felt she was doing something that might also help her children and children avoid the disease.

This is an exciting time for Alzheimer’s disease clinical research. Thanks to advances in our understanding of this disease and powerful new tools for “seeing” and diagnosing it in people, scientists are making great strides in identifying potential new interventions to help diagnose, slow, treat, and someday prevent the disease entirely. But Alzheimer’s research can move forward only if people are willing to volunteer for clinical trials and studies. Before any drug or therapy can be used in clinical practice, it must be rigorously tested to find out whether it is safe and effective in humans. Today, at least 50,000 volunteers, both with and without Alzheimer’s, are urgently needed to participate in more than 175 actively enrolling clinical trials and studies in the United States. To reach that goal, researchers will need to screen at least half a million potential volunteers. This fact sheet describes. Alzheimer’s disease clinical trials and studies, explains their scientific design, and offers key facts and questions to consider about volunteering for clinical research.

Comparing Alzheimer’s Disease Clinical Trials and Studies
Clinical research is medical research involving people. It includes clinical studies, which use long-term observation and analysis in large groups to determine how a disease or condition may occur and progress, and clinical trials, which test possible interventions to diagnose, prevent, treat, and someday cure a disease.
Clinical studies observe people in normal settings, with less direct intervention than in clinical trials. Researchers gather baseline information, group volunteers according to broad characteristics, and compare changes over time. Studies of Alzheimer’s disease may help identify new possibilities for clinical trials. The National Institute on Aging (NIA), part of the National Institutes of Health (NIH), sponsors several major ongoing studies, such as: investigators study brain images and biomarkers in people with normal cognitive aging, mild cognitive impairment (MCI)—a disorder that may precede Alzheimer’s disease, and earlystage Alzheimer’s to develop better indicators of the disease and its progression. For example, they have found that certain changes in biomarkers, like proteins or enzymes in blood or cerebrospinal fluid, may signal early Alzheimer’s and have established a method and standard for testing these biomarkers.

Alzheimer’s Disease Genetics Studies
Researchers analyze DNA from persons with and without the disease to identify genes that may be Alzheimer’s risk factors. Clinical Trials test interventions such as drugs or devices, as well as prevention methods and changes in diet or lifestyle. (See examples below.) Drug testing is the focus of many clinical trials. Currently, more than 90 drugs are in clinical trials for Alzheimer’s disease, and more are in the pipeline awaiting U.S. Food and Drug Administration (FDA) approval to enter human testing. FDA-approved clinical trials are always preceded by laboratory analyses in test tubes and in tissue culture, followed by studies in laboratory animals to test for safety and efficacy. If these show favorable results, the FDA gives approval for the treatment or intervention to be tested in humans. Clinical trials advance through four well-defined phases to test the treatment, find appropriate dosage, and monitor side effects in increasing numbers of people. If investigators find an intervention safe and effective after undergoing the first three phases, the FDA decides whether to approve it for clinical use. In Phase IV, the FDA continues to monitor the effects of a new drug after its approval for marketing and clinical use. If problems occur, approval may be withdrawn and the drug recalled. After the efficacy of a drug for one health condition is established, Phase IV studies can evaluate the activity of the drug in other conditions.

Clinical Trials Seek Answers Through Rigorous Testing
Scientists conducting Alzheimer’s disease research test a theory by using the classic scientific method. They first identify a valid question related to Alzheimer’s. The question is posed as a hypothesis that is either proven or disproven by the clinical trial. For example, research has linked high blood cholesterol with Alzheimer’s disease. Scientists asked: Will medications that lower cholesterol also have an effect on Alzheimer’s disease? They formed a hypothesis: IF reducing blood cholesterol has a beneficial effect on Alzheimer’s disease, THEN statins (drugs to reduce cholesterol) will slow the progression of Alzheimer’s disease. To test that hypothesis, NIA has funded a number of clinical trials, which are ongoing.
Why Placebos Are Important
The “gold standard” for testing interventions in people is the randomized, placebo-controlled clinical trial, because it is designed to reduce error or bias. Volunteers are randomly assigned—that is, selected by chance—to either a test group receiving the experimental intervention or a control group receiving a placebo, an inactive substance resembling the drug tested. Comparing results indicates whether changes in the test group result from the treatment. In many trials, no one—not even the research team—knows who gets the treatment, the placebo, or another intervention. When the participant, family members, and staff all are “blind” to the treatment, the study is called a double-blind, placebo controlled clinical trial.
Placebo and test groups are equally important, as shown in the results of numerous clinical trials. For example, early research suggested that ginkgo biloba, an herbal supplement, might be effective in delaying dementia. To find out, NIA sponsored a 6-year, Phase III clinical trial with more than 3,000 participants age 75 and older. In 2008, scientists reported no significant differences in effect on dementia in adults who received ginkgo biloba or placebo.
This result was disappointing, but scientists gained a wealth of information to inform future research. For example, researchers learned more about subgroups of participants who may be at greater risk for developing dementia, and ginkgo’s possible effects on cardiovascular disease, cancer, depression, and other age-related conditions. They also gained insights on issues related to the design and conduct of large dementia prevention trials in older adults, such as the number of participants needed to provide clinically significant measures on outcomes like occurrence of dementia.Benefits of Volunteering
Help others, including future family generations, who may be at risk for Alzheimer’s disease
Receive regular monitoring by Alzheimer’s professionals Learn more about the disease from experts. Get information about support groups and resources.Participating in a Trial or StudyHow Can People Find Out About Alzheimer’s Disease Trials and Studies?
Information about Alzheimer’s disease clinical trials and studies is available through a number of sources. First, talk to your doctor, who may know about local or specific research studies that may be right for you. NIA supported Alzheimer’s Disease Centers or specialized memory or neurological clinics in your community may also be conducting trials. You might also learn of clinical trials through newspapers or other media. To search more widely for trials or studies, you can also visit websites like ClinicalTrials.gov or the NIA Alzheimer’s Disease Education and Referral (ADEAR) Center clinical trials database. See the “For More
Information” section at the end of this fact sheet for resources and contact information.
What Happens When a Person Joins a Clinical Trial?
First, it is important to learn as much as you can about the trial. Staff members at the research center are trained to explain the trial in detail and describe possible risks and benefits. They clarify participants’ rights. Participants and their families can have this information repeated until they are sure they understand it. After questions are answered, participants sign an informed consent form, which contains key facts about the trial. Next, they are screened by clinical staff to see whether they meet criteria to participate in the trial. Screening examines the characteristics people must have to participate in a particular trial, as well as characteristics that may exclude them. The screening may involve cognitive and physical tests that provide baseline information to compare with future changes. If participants meet all criteria, they are enrolled in the trial.

Steps in Clinical Trial Participation1. After initial phone screening, interested persons go to the study site.2. Staff members explain the trial and gather more information.3. The participant or proxy signs an informed consent.4. The participant undergoes a screening process that indicates whether he or she qualifies for the trial.5. A first visit (called the “baseline” visit) is scheduled, in which cognitive and/or physical tests may be administered.6. Selected participants are randomly assigned to distinct treatment groups.7. Participants and family members follow the trial protocol and report any issues or concerns to researchers.8. They may visit the research site for new cognitive, physical, or other evaluations and for discussions with staff.9. Investigators collect information on effects of the intervention, disease progression, and the safety and well-being of the participant and caregiver.10. The participant continues to see his or her regular physician for usual health care.
Informed Consent
Each participant must sign an informed consent agreement, affirming that he or she understands the trial and is willing to participate. Laws and regulations regarding informed consent differ across States and institutions, but they are all meant to ensure participant safety and protection, and to prevent unethical experimentation on vulnerable populations. Researchers conducting clinical Alzheimer’s research must consider the declining memory and cognitive abilities of people with this disease or another dementia and must evaluate their ability to understand and consent to participate in research. If the person with Alzheimer’s is deemed unable to provide informed consent because of problems with memory and confusion, an authorized legal representative, or proxy (usually a family member), may be able to give permission for the person to participate, particularly if it is included in the patient’s durable power of attorney. A durable power of attorney is a legal agreement designating who will handle the patient’s affairs when he or she no longer can. NIA’s Legal and Financial Planning for People with Alzheimer’s Disease Fact Sheet (available at www.nia.nih.gov/Alzheimers/Publications/legaltips.htm) provides more information.
Inclusion and Exclusion Criteria
In the experimental protocol (written research plan), researchers define the inclusion criteria volunteers must meet to participate, such as age range, stage of dementia, racial and/or ethnic group, gender, genetic profile, and family history. The protocol also defines exclusion criteria, such as health conditions or medications that prevent volunteers from joining a trial. Many volunteers are needed for screening to find enough people for a study. Generally, volunteers can participate in only one trial or study at a time. It is important to realize that different trials have different inclusion and exclusion criteria, so being excluded from one trial does not necessarily mean exclusion from another.
What Happens During a Trial?
Usually, participants are randomly assigned to one of the trial groups. People in each group represent selected combinations of characteristics (such as age, sex, education, or cognitive ability). The test group receives the experimental drug or intervention. Other groups receive a different drug, a placebo, or another intervention. Participants and family members follow strict instructions and keep detailed records. Every so often, they visit the research site to receive more physical and cognitive exams and talk with staff. Investigators collect information on the effects of the test drug or treatment, evaluate disease progression, and see how the participant and caregiver are doing.
What Volunteers Need To Know
The following issues are some of the key concerns potential participants should consider before deciding whether joining a trial or study is right for them.Expectations and motivations.
Single clinical trials and studies generally do not have miraculous results, and participants may not directly benefit.Uncertainty.
Some people have problems because they are not permitted to know whether they are getting experimental treatment or a placebo, or may not know results. Can you live with these sorts of uncertainties?Finding the right clinical trial or study.
Volunteers must meet the inclusion and exclusion criteria listed by researchers. Even if a participant is not eligible for one trial or study, another may be just right.Time commitment and location.
Clinical trials and studies last days to years and may require multiple visits to study sites, such as private research facilities, teaching hospitals, Alzheimer’s research centers, or doctors’ offices. How much time and travel are you willing and able to undertake?Risk.
Researchers make every effort to ensure the safety of participants, but all clinical trials have some risk. What level of risk are you comfortable with?Rights of Volunteers
Clinical trial volunteers have important rights, including the rights to receive clear, complete information and to withdraw from a trial anytime.
Right to Clear Information
Understanding what is involved in a clinical trial or study can relieve anxiety. Potential volunteers have the right to a thorough explanation and answers to all of their questions.
Participants and family members can have information repeated and explained until they understand it.
Right To Withdraw
Volunteers can withdraw from a trial or study anytime they or their physician feels it is in their best interests. For example, a new health condition in a volunteer may require medications that are risky if combined with experimental treatments.Clinical Trials and Studies Need All Kinds of People
Clinical trials and studies are a partnership between researchers and volunteer participants, who work together to answer questions about humans we can answer in no other way. Ensuring that those answers are correct requires including volunteers of all kinds: men and women, African Americans, Latinos, Native Americans, Asian Americans, whites, people with Alzheimer’s or a family history of the disease, people with conditions that may lead to Alzheimer’s, and those without the disease (controls). An intervention may work differently in one group than in another. Without adequate representation of a particular group, questions about safety and effectiveness of a treatment in that group may remain unanswered. In addition to diversity, the number of people included in research can affect results. Changes or effects seen in smaller groups may or may not show up significantly in larger groups.For More Information
To find out more, talk with your healthcare provider or contact NIA’s ADEAR Center at 1-800-438-4380. Or, visit the ADEAR Center clinical trials database at www.nia.nih.gov/Alzheimers/ResearchInformation/ClinicalTrials. You can sign up for e-mail alerts that identify new clinical trials added to the database. More information about clinical trials is available at www.ClinicalTrials.gov.
Alzheimer’s Disease Trials and StudiesAlzheimer’s Disease Education and Referral (ADEAR) Center
P.O. Box 8250 Silver Spring, MD 20907-8250 1-800-438-4380 (toll-free)www.nia.nih.gov/Alzheimers The National Institute on Aging’s ADEAR Center offers information and publications for families, caregivers, and professionals on Alzheimer’s disease research, diagnosis, treatment, patient care, caregiver needs, long-term care, and education and training. Staff members answer telephone, e-mail, and written requests and make referrals to local and national resources, including clinical trials and studies. The ADEAR website offers a searchable database of Alzheimer’s clinical trials and studies (www.nia.nih.gov/Alzheimers/ResearchInformation/ClinicalTrials), as well as free, online publications in English and Spanish; e-mail alert and online newsletter subscriptions; the Alzheimer’s Disease Library (AD Lib) database; and more.Questions To Ask About Clinical Trials and Studies
What is the purpose?
What tests and treatments will be given?
What are the risks?
What side effects might occur?
What may happen with/without this research?
Can I continue with treatments for Alzheimer’s and other conditions as prescribed by my regular doctor?
How will you keep my doctor informed about my participation in the trial?
Does the study compare standard and experimental treatments?
How long will it last? How much time will it take?
Where and when will the testing occur?
How much flexibility will I have?
How will it affect my activities?
If I withdraw, will this affect my normal care?
Will I learn the results?
Could I receive a placebo?
What steps ensure my confidentiality?
Are expenses reimbursed?
Will I be paid?Alzheimer’s Association
225 North Michigan Avenue, Floor 17 Chicago, IL 60601-7633 1-800-272-3900 (toll-free) www.alz.org
The Alzheimer’s Association is a national, nonprofit organization with a network of local chapters that provide education, support, and referrals to local resources and services for people diagnosed with Alzheimer’s disease, their families, and caregivers. The Association also funds Alzheimer’s research.Alzheimer’s Disease Cooperative Study (ADCS)www.adcs.org
The ADCS, funded by the National Institute on Aging, is a consortium of medical research centers and clinics working to develop and test drugs to treat Alzheimer’s disease.
General Information About Research ParticipationClinicalTrials.govwww.ClinicalTrials.govClinicalTrials.gov is a comprehensive, searchable online registry of federally and privately funded clinical trials and studies.U.S. Food and Drug Administration (FDA)www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ParticipatinginClinicalTrials/
The FDA regulates all U.S. clinical trials of drugs and devices and offers information and resources for clinical trials participants and professionals.Center for Information and Study on Clinical Research Participation(CISCRP)www.ciscrp.orgwww.smartparticipant.org
CISCRP is an independent, national nonprofit organization working to promote greater understanding and awareness of clinical research participation and the role it plays in
public health.Project IMPACT (Increase Minority Participation and Awareness of Clinical Trials)www.impact.nmanet.org
Project IMPACT, an initiative of the
National Medical Association, seeks
to increase awareness and participation
of African Americans and other
minorities in clinical trials and research.
NIH Publication No. 09-7484 September 2009

Wednesday, June 27, 2012

I don’t remember where I found this article…but it bears repeating. When you think about it, how many caregivers are providing care without support from other family? If this is you, please stop waiting for others to volunteer to help. My experience is it will NEVER happen. Acutually, the opiside is happening…the longer you don’t ask for the help, the more they all think you are doing fine without thier assistance and are relieved.

If you are at the end of your rope…or if you are just starting out providing care, there are ways to ask for help…and you should!
There are many reasons that people take on the role of primary caregiver, such as closer proximity to the elderly parent or greater availability to help out. But just as often it’s because they see themselves as most able to do the job. Unfortunately, a competent and capable adult child who has taken on the role of caregiver often begins doing more and more until eventually she or he becomes responsible for the majority of the caregiving duties.
While it’s best to involve other siblings early on before such a pattern develops, it is possible to redistribute the responsibility later in the game. Here are some ideas for opening the lines of communication and enlisting the support of your siblings:

Call a family meeting – Whether by conference call or in person, schedule a time to meet with all of your siblings, even those from out of town, to discuss what needs to be done to help your parents.

Make a written agenda – “Write down an agenda for discussion,” says Wendy Kaufman, a family and life-balancing specialist and CEO of Balancing Life’s Issues, Inc. “Write down details of all you are doing now, such as health care, home obligations and transportation.”

Do as much listening as talking – Explain how you feel in a matter-of-fact way. But be open to other’s feelings and viewpoints, too. Your siblings may not have been aware of how much you’ve been doing. Or perhaps they are feeling hurt and angry about being left out and uninformed about your parent’s needs.

Be specific about what you want – Have an idea beforehand about which tasks you’d like to be relieved of rather than just a general appeal for help. Perhaps you’d like someone to take over the driving to physical therapy appointments, or give a hand with grocery shopping or meal preparation.

Divide up tasks – Split up the labor among those present. While there are many ways of doing this, for example dividing chores by expertise. A family member with experience in health issues could take on all of the medical appointments, for example. Or the person with good business sense might handle legal issues. And make sure to include siblings who live a distance away. Even if they can’t help with day-to-day needs, they might offer money for a housekeeper, or be willing to come every few months to take over and give others a break.

Don’t expect total equality – It’s not likely that you’ll achieve total equality in division of tasks. This is okay, says Kaufman. “It’s more important to make sure that all siblings have a manageable lifestyle, that all can help to alleviate some of the stress on each other.”

p.s. if you know the source of this article I would like to know to give them credit.

Tuesday, June 26, 2012

Being a caregiver means that your budget has to stretch even further than it used to. Not only is your time limited, but your income is probably reduced and you have absorbed extra health care costs. Saving money now become even more critical. So we scour the internet looking for ways to help.

5 Shopping Tricks to Save You More at the Store

by Mary Hunt, founder of Debt-Proof Living

Retailers work hard to get our money. They offer “special promotions” and put other tactics into play, even hiring human behavior specialists to figure out our shopping habits and how to get us to spend more. But by having a few tricks of your own, you can foil those plans and save big.

Trick to Use: Buy only the “loss leaders,” then leave. A loss leader is something retailers sell so cheaply, they’re willing to lose money on the deal. The first clue to finding one: astonishingly low prices. And if the item is limited, i.e. “Limit 2,” that’s a dead giveaway that it’s a loss leader. It’s also not unusual for supermarkets to tie loss leaders to a holiday, Memorial Day by offering something like, “Buy the Hot Dogs and Get the Buns Free!” My personal benchmark is if it’s at least 50% of the regular price, that’s a loss leader. Stores use these as a way to get you there, knowing you’ll stay a while and buy other items at full price. Studies show that half of all supermarket purchases are unplanned. But when you arrive having scoured the circulars and savings blogs and are armed with a list to buy just loss leaders, you upset their plans and they lose. You win.

Trick to Use: Pay with cash. Even though retailers don’t have to pay fees when you pay with cash, they hate it. They know that if you pay with a stand-in, like a credit or debit card, you will spend more and boost their bottom line. In fact, researchers at the Massachusetts Institute of Technology found that consumers will spend up to 100% more on an item when using plastic. So unless you are paying by mail or online, always use cash. You win.

Trick to Use: Say no to the extended warranty. This is all you need to know: The profit margin on an extended warranty is huge—much greater than the profit on the item itself. Meaning, stores make their money on the warranty more than the sale of the item. Just keep saying: “No thanks.” Most appliances and electronics come with a manufacturer’s limited warranty for the first 90 days, which is generally sufficient. If you’re worried about the product breaking, say “no” to the store warranty, but put that same amount money you would have spent on it, into a special account. If the item fails, use that money to pay for the repair. If it doesn’t, a nice nest egg awaits. And keep in mind that some credit cards extend your warranty for free. For example, anything purchased with an American Express card automatically receives an additional year extension beyond the manufacturer’s warranty; Visa Signature Cards also give one additional year. Call your card company to learn if you have this benefit already. You win.

Trick To Use: Grab the amazing deal, but pay it off ahead of time. Stores often offer zero-interest when you pay over a period of time, or they will defer payment for a period of time. The reason they do this? Statistics say that you won’t pay it off on time, even though you are sure you will when you enter into the deal, and that you will end up paying a high interest rate, which will be retroactive to the date of purchase—meaning, the interest will be waived if paid in full within, say, 12 months of purchase. But if you do not pay in full, you will automatically owe something like 29.99% interest starting back at the date of purchase. On a big ticket item like a television or furniture, that could add hundreds of dollars to your balance. Instead, always pay off the item within the given time frame. Automate your payments using your bank’s online auto bill-pay feature and you won’t have to rely on your memory to make those payments on time. If the term is for 12 months, give yourself some breathing room by creating your payback schedule for say 10 months. You win.

Trick To Use: Wait to buy seasonal items at clearance prices. Retailers are in the business to make big profits on full-priced items, and they know you can’t resist new items to decorate your home or outfit your family. They want you to feel compelled to buy new stuff each season and each holiday. Doing otherwise messes with their plans.So instead of buying, stop yourself from running to the store right away, and wait until seasonal stuff goes on sale. You win.

* I hope you found this article useful…if you ever want to know which websites I search to bring you cool articles, ideas, and statistics don’t hesitate to ask. –yours, Donahueg

Friday, June 22, 2012

When it comes to older parents we expect some declines in functioning. Albeit physical or mental, certain changes are bound to occur. As their adult children, they may become dependent upon our help. For many of us this is perfectly acceptable. But at what point should we become seriously concerned and step in, against their express wishes, and start directly providing them care or move them into a safer environment like a senior board & care or an assisted living community. It's never easy. Because they will rarely admit that they have lost the ability to take proper care of themselves. If dementia is involved you will face strong resistances. Because the ability to reason is severely damaged. But waiting too long has serious consequences: accidents, illness that become crippling or terminal, injury to others, etc. etc.
The following are 30 signs that your older parent is not doing well. 3 or 4 of them are acceptable. 5 or 6 are a serious concern. 7 or more indicate it's time to take action.

Signs that You need to Increase the level of care Provided

by Diane Carbo

Here is a list of things that you may want to observe to identify that more help is needed.

PHYSICAL SIGNS

1. There will be some difficulty with walking. May start to hold onto furniture or walls when ambulating.

2. Experiencing frequently falls or unsteadiness. You may see the presence of bruises.

3. Decline in personal hygiene or grooming. May start to wear stained clothes, have body odor, infrequently bathes or washes hair. May wear the same clothes day after day.

4 Experiences changes in eating habits. May only snack, have a decreased appetite, eat one meal a day, forget to eat, makes poor food choices, or has a refrigerator of expired food or no food in the refrigerator.

5. Starts having problems with incontinence.

6. The home environment is unsafe. Maybe it is unclean, has cluttered walkways or poor lighting. The home may need repairs. There are broken or missing smoke detectors, lack of security, may leave doors unlocked or the stove or oven on.

7. Experiences significant weight loss or gain.

8. Lives in chronic pain

9.Abuses alcohol or prescription drugs.

FINANCIAL SIGNS

10. There are unpaid or past due bills.

11. Unopened piles of mail.

12. Becomes unable to manage their checkbook.

13. Difficulty dealing with money properly.

14. May be a victim of scams or financial abuse.

COGNITIVE SIGNS

15. Experiences poor or decreased judgment.

16. Has difficulty coordinating or monitoring prescriptions and being compliant with different medications.

17. May experience paranoia, forgetfulness or memory loss.

18. Gets lost and can't find their way back home, in familiar surroundings.

19. Leaves stove on, unplugs the refrigerator.

20. Has difficulty recognizing friends or family members. May not remember them at all.

26. May start to call adult children or friends repeatedly at inappropriate hours of day or night.

SOCIAL / EMOTIONAL SIGNS

27. Social Isolation

29. Becomes depressed or feels lonely. May exhibit this by crying, feelings of sadness or have lack of energy or feelings of hopelessness. May experience an increase or decrease in sleeping and/or appetite.

30 Exhibits a lack of interest in formerly enjoyable activities, may stop participating in social, church or volunteer activities.

Sunday, June 17, 2012

The Lewy Body Dementia Association just posted an article about a promising treatment for Lewy Body Dementia.

But let me take a moment to ask you: Do you ever read articles like this and think to yourself that even if the damn drug works it will not reach the Market in time for your family? Well why wait? Why not get personally involved in a drug trial? The risk verses rewards is in your favor…your parent or spouse is not going to get better, but a drug trial may have benefits, possibly tremendous ones! There is always a risk of a medical complication, but even if the trial does not work for you, you have played your part in finding an eventual cure.

Here in Southern California, a wonderfully run small firm PRI (Pharmaceutical Research Institute) did the initial research that brought Aricept and Namenda to market. They were not the only one, those very common medications were once part of a trial and were tested in research centers all over the Country. My experiences is these centers are ALWAYS looking for volunteers. (if you want help finding a drug trial or have questions about it…post a comment or write me directly)

Not only are you giving your loved one a fighting chance, most companies offer financial compensation for time, give great medical attention, and offer tremendous support for caregivers.

Open Label Trial of Armodafinil Shows Promise in LBD

June 12, 2012 – At the American Academy of Neurology’s annual meeting in April, researchers from the Mayo Clinic reported on a small clinical trial which assessed the safety, tolerability and efficacy of armodafinil therapy for excessive sleepiness (hypersomnia) associated with dementia with Lewy bodies (DLB).

Twenty subjects were enrolled in this open label trial, with three people who did not complete the trial due to worsening disease or death from community-acquired pneumonia. Individuals in the study had mild to moderate dementia and were already being treated with medications routine in DLB clinical care for dementia, behavior, sleep and movement symptoms. Individuals were treated for 30 days with 150 mg armodafinil to set up safety and tolerability and were increased to 250 mg for an additional 60 days.

Mild to marked clinical improvement was observed in 90% of participants, with moderate to marked improvement seen in 45% of participants. Improved caregiver quality of life was reported as well. “The majority of patients experienced some degree of improvement in key features associated with DLB, and most tolerated the medication without significant side-effects,” said Dr. Brad Boeve who directed the trial. “Yet some patients continued to experience significant daytime sleepiness and other problematic DLB features. This medication should obviously not be considered a cure for DLB, but it is another option for clinicians and patients to consider as they work together in treating bothersome symptoms associated with DLB – particularly excessive daytime sleepiness.” Significant improvement over baseline was reported in the ability to maintain wakefulness, and significant improvement was reported in apathy and improvement occurred in visual hallucinations, delusions and anxiety, with the exception of the 3 individuals who discontinued participation.

This data suggests treatment with armodafinil offers reasonable safety, tolerability and improvements over baseline in excessive sleepiness in individuals with DLB, and may reduce neuropsychiatric features as well.

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Donahue Vanderhider, MSG

www.caregiverrelief.com
www.easycaregiving.com
http://discoverlongevitynow.com
http://caregiverrelief.wordpress.com
A professional Gerontologist, Donahue Vanderhider is recognized for his unique talents in providing practical information and support for seniors and thier adult-children.